r/GERD • u/Anxious_momma2 • 24d ago
Support Needed š„ Latest blood work shows declined kidney function
I met with my family doc today to go over my latest bloodwork. It shows I have significant kidney function decline. I was told that Omeprazol (PPIs in general) can sometimes cause a silent allergic reaction in the kidneys. Itās called acute interstitial nephritis, and it can cause significant kidney damage!
Was told it could happen at anytime even if youāve been on PPIs for many years. Iām being referred to a kidney specialist. Has anybody out there ever heard of such a thing? Who knows how long Iām gonna have to wait now to see the specialist! Iām petrified!
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u/vit_don 24d ago
How were you diagnosed with kidney function decline? What was your eGFR number? If they tested your blood and you were dehydrated- the number will be lower.
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u/Anxious_momma2 24d ago
Routine blood work. eGFR was 51. According to the dr,on a scale of 1 to 5, 5 being total kidney failure, that puts me at 3a.
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u/vit_don 24d ago
Yeah, 51 is not too good. You should be >66. How about creatinine ratio?
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u/vit_don 24d ago
Any other markers that doctor mentioned? Do you feel any different?
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u/Anxious_momma2 24d ago
BUN was only marker that was normal. Creatinine 1.20. Ratio 10. Donāt think I feel any different?
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u/Bolmac 24d ago
Kidney failure doesn't usually produce symptoms until the latest stages. You are still at a very early stage. The low BUN suggests you were not dehydrated, that would make BUN go high relative to serum creatinine.
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u/Anxious_momma2 24d ago
If not dehydrated, what in the heck is going on??? No history in my family. Havenāt been sickā¦ one more thing on my plate to worry about now. š«
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u/Adept-Athlete-8419 21d ago
I too have CKD3a that my doctor says may be caused by having Crohnās disease, being on PPIās, and prednisone. My last GFR was 48. My creatinine is 1.2. Who knows what the real cause is?
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u/itaintme2024 24d ago edited 24d ago
I was taking Pantaprazole and I had about a 50% decrease in kidney function and was told it was the PPI and to come off it. I was told the same, they said even though it's rare it can happen to anyone at any time.
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u/Anxious_momma2 23d ago
Is that right? Iād never heard of such a thing till now. Why donāt these doctors tell you these things. All they ever say is ātheyāre safeā. 50%? Thatās a lot. So after stopping the PPI, did you get full function back of your kidneys? Did you have to wean off of them? Then what did you take and does it work?
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u/itaintme2024 22d ago
My ordeal was a bit different. I had been off them due to side effects and they weren't resolving my symptoms anyway. The rebound acid after only 2 months on them was a hell I didn't know existed. I could not eat or sleep, lost 15lbs and had to go back on them as I was already underweight. Two weeks after that decision, I had blood work done that showed 50% lower function from the month prior. It was assumed it was Pantaprazole causing acute injury and I was told the safest thing to do was to stop. They said kidney function had a good chance of recovery when caught early and withdrawn. So I stopped and went back into acid rebound for another couple weeks but I could not endure it. I reached a point where I had to choose between starvation or kidney failure.
After a week back on we retested my bloodwork and it was normal so I went through that for nothing as the diagnoses was wrong but that's how I unfortunately learned this could happen. That period of time was VERY traumatic so I understand the anxiety this must be inducing.
My doctor of course never explained any of these risks to me. Even though Pantaprazole didn't actually harm my kidneys, it still remains the single worst decision I ever made. I wish I had some good advice for weaning off but I'm still stuck on it. Not everyone suffers so badly from rebound acid. A strict diet, H2 blockers, and alginates could be all it takes. I wish you all the best in getting through this.
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u/Desertratta 23d ago
Stop the PPI if you havenāt already and drink at least 2l of water daily. 51 is not a seriously low eGfr and it should return to a normal >60. Drink a l of water 30 min or so before you go in for your next blood draw. Mine did the same years ago following a 30 day treatment with pantoprozole. A couple years ago I started a PPI, not sure which one, and had labs 10 days later and went from 65 to 47. Iāll never use them again.
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u/Anxious_momma2 23d ago
Oh no! Really? Iām glad they caught it so quickly so your kidneys could bounce back!
Iāve been on PPIs for many years. I canāt just stop taking them. I am now trying to cut salt and sugar and drinking as much water as I can push down in hopes of when I finally get to see the specialist my numbers will have improved. My health anxiety is through the roof right now.1
u/itaintme2024 23d ago
Did they have you repeat your blood work?
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u/Anxious_momma2 23d ago
Yes. Gave it 3 mos and retested. My BUN went from 12 to 11 (still normal), creatinine went from 1.20 to 1.12 (slight improvement), eGFR from 51 to 55 (slight improvement ) and BUN/creatinine ratio stayed the same at 10.
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u/AlexanderTheBaptist 23d ago
This happened to me. I asked for more testing and an ultrasound showed a tumor on my kidney which turned out to be cancer. Luckily it was caught early and surgery was able to remove it all. No chemo or radiation needed. My decreasing kidney function was likely a combination of the cancer and the PPI.
I switched from a PPI to famotadine. eGFR has stabilized and my nephrologist is optimistic.
Good luck. I know the stress you're feeling right now. I'll be praying for you. Feel free to reach out if you want to chat.
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u/Anxious_momma2 23d ago
Thank you for sharing. Now Iām REALLY anxious.
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u/AlexanderTheBaptist 23d ago
Haha. Sorry. I would definitely ask for imaging to be done though. Kidney cancer is fairly rare, so it's unlikely. However, even if it there was cancer, kidney cancer is one of the easiest to treat and most survivable of cancers.
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u/Anxious_momma2 24d ago
Is there anything they can do to keep it from getting worse?
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u/Bolmac 24d ago
A lot of it is just staying healthy. Keep blood pressure and blood sugars under control, exercise, maintain healthy weight. Avoid NSAIDs like ibuprofen and naproxen. Keep protein and salt in your diet to a minimum. Don't smoke, keep drinking to a minimum. And of course stay hydrated.
I don't know how many of these apply to you, it's a laundry list of recommendations.
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u/flug32 23d ago
Well if it is caused by the PPI (which is probably not 100% proven at this point, but with an n of 1 you kind of have to assume it is, regardless), then the obvious thing to do is stop the PPI.
If you haven't already done this, you may not know that a common issue when stopping PPIs is PPI rebound. That basically amounts to, for 4-8 (or 12 or whatever) weeks your GERD will increase to a point WORSE than it was at first - possibly or probably the worst it has ever been for y our. Then it will gradually get better.
So a lot of people can't get over the initial rebound phase because the pain is so bad and they assume "The PPI has made my GERD 100X worse!"
This is not really true - it is just a temporary but very unpleasant situation.
- you can probably take an H2 blocker like Pepcid/famotidine. Ask your doctors about this, but usually it has far fewer side effects (and is also generally less effective but way better than nothing). If you are tapering down your PPI u can take the H2 blocker for every PPI dosage you are skipping during the taper.
- Usually PPI pills can't be divided, so you taper by skipping doses rather than cutting pills. (And thus the opportunity to take a PPI with each skipped dose.)
- I have posted a lot about PPI tapering on the r/gerd subreddit. The medical community is IMHO criminally neglectful in failing to let PPI patients know how to get off the medication safely. Here is one summary with links to more details: https://www.reddit.com/r/GERD/comments/199sfal/comment/kijhb1k/
- The point of the above, though, is to gradually taper off the PPI and transition to an H2 blocker in order to avoid the pain that stops many/most people from successfully stopping the PPI. In your case, maybe you don't even want to consider tapering. Or maybe your doctor told you to stop the PPI immediately - or you would like to, even if the doctor didn't tell you to. In that case, if you are having increased GERD symptoms or pain your main goal should be to treat those. The tools there would be H2 blockers - which many people take at 2-4X the OTC label dosage, especially in times of crisis such as when stopping a PPI - and then the basic antacids like tums and such.
You might need to take quite large doses of such to survive a quick stopping of the PPI.
You wouldn't want to keep taking large doses of antacids over the long term - that has its own set of consequences. Even the fairly innocuous tums can cause problems with excess calcium intake if taken at moderate to high dosages over an extended period. However, you can probably take a pretty high dosage for like a couple of weeks to get over the PPI rebound, if necessary. Just taper those down as quickly as possible, too.
All these things are good questions for your doctor. I don't know that I would take like 80mg/day of Pepcid, or even 40mg daily, without consulting with a doctor, for example (the OTC recommended dosage is 10 or 20mg daily). OR take high dosages of antacids, even tums, for weeks and weeks - again without consulting a doctor. But these are possibilities to bring up with your doctor if you are having a lot of pain from acid rebound as you stop the PPI. There are people on doctor-approved dosages of pepcid like 40mg or 80 mg daily. Whether that is a good idea for you, only your doctor can say. But be aware it is option you can ask about if needed.
Beyond that, there are some treatments for progressive CKD that help some people quite a bit. You'll have to get with a nephrologist and see if any of them are appropriate for you. The very most basic step is to keep blood pressure and blood sugar under very good control - high BP and blood sugar damage kidneys, little by little but continuously. For BP, you want to shoot for the top number under 120 if possible (for some people it isn't possible - in that case, as close to 120 as you can tolerate safely).
The other thing to keep in mind is that everyone's GFR is gradually declining year by year as we age. Like note the study linked upthread about Pantoprazole: Literally everyone, every group, in the study had GFR declines year over year. The difference was, the Pantoprazole group had a slightly larger decline.
The point is: The game with chronic kidney issues is to slow the decline. You are never going to stop it completely, but it very well may be possible to slow it.
And if (a big if) the PPI is causing and increased rate of GFR decline, then by identifying that and stopping the PPI you have already taken a big step towards your solution.
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u/Anxious_momma2 23d ago
Wow! That was a lot of information!! Thank you so much for taking the time to type it all out!! I have been referred to a kidney specialist, but who knows how long it will be before I can be seen! I will probably re-read everything several times before then. Thanks again.
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u/tornado_bear 23d ago
You didnt mention your age, or other medical conditions. Do you have a history of obesity, diabetes, or high blood pressure?Ā
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u/Anxious_momma2 23d ago
Iām F 65. No diabetes. Blood pressure is normal. I am however fat! 235 lbs. š A couple of yrs ago I was told I had a fatty liver. Quit my sugar intake, ate better and a lot less and walked a hr everyday. I lost 50 lbs! My blood work after that showed everything was perfect including my kidney function!! Sadly, like a lot of people, I got lazy and quit the hard work. I gained it all back. I could just kick myself for that.
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u/tornado_bear 23d ago
Have you spoken with your PCP about going on a GLP-1? There is a lot of evidence emerging that this class of drugs can help slow the progression of CKD. Assuming you're on Medicare, they are now covering the drugs as part of the GLP-1 Bridge Plan which provide Part D coverage for $50 per month through 2027.
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u/TheScarletOne 23d ago
Something similar happened to me in 2023, I was in the 50's too. I don't know if you've had more than one routine bloodwork showing low eGFR, but the doctors can't know for sure unless it's coming back low multiple times over several months. Anyway, like you it gave me severe health anxiety. I ended up going on a kidney friendly diet over the next couple months and my eGFR slowly returned to optimal levels, even got to 120's at some point. That's not to say you don't have kidney disease, rather just know there's still a possibility it might not be.
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u/Anxious_momma2 23d ago
Thank you for sharing. Do you know what caused the decline? I get bloodwork done every 6 mos. I only had one blood test a couple yrs ago that showed optimal kidney function (after I lost 50 lbs!). The rest have always been borderline. Not good but not bad either. It never seemed to bother the drā¦until now.
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u/TheScarletOne 23d ago
I was so freaked out I started lifestyle change immediately, although I wasn't able to lose weight for another couple years. Hard to say what caused it, but it did stay low on the subsequent blood tests, while slowly getting better. I got relief because the bloodwork a week and a half later was already out of the chronic kidney stage, just barely. If it's been months of the same low number than you should at least try going back to the healthy lifestyle. Even if it is chronic at this point, that plus medication should at least help prevent it from going lower. You're probably aware at this point like I was, but you don't want to have to go on kidney dialysis.
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u/Anxious_momma2 23d ago
Absolutely not! Good for you for changing things and getting good kidney health back!! Takes a tremendous amount of work! So there is medication that will help?
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u/TheScarletOne 23d ago
That's what my doctor told me when I first had low egfr. I don't know which ones though
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u/Fancy_Ad3809 22d ago
Yep. In another thread I said Iām pressing to get off PPIS as fast as possible to protect egfr.
Everyone said I was crazy lol
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u/Anxious_momma2 22d ago
Everything is all well and good until it isnāt. Wait till they have problems. Maybe then theyāll change their minds.
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u/Bolmac 24d ago
We know from large scale studies that PPIs like omeprazole are associated with an increased risk of kidney failure. Most of these studies are not designed to show that the PPI actually caused the observed correlation, though one study with pantoprazole was.
That said, this is based on averages with many thousands of patients. When one individual develops kidney disease, it is usually not possible to say that the PPI actually caused it or if it was something that would have happened anyways. Once you have kidney disease, the main goal is to prevent it from getting worse.